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Chris:

I couldn't agree with you more regarding the costs associated with STN
surgery. We too, had the same experience when we started doing the procedure.
Patients who could afford $50,000 were able to have the surgery. At this
point, after much arguing and threatening insurance companies, along with
bombarding them with reprints of scientific journals many patients can now
have the procedure done.
Medicare and Medicaid are not paying for the procedure yet. Once it is FDA
approved I am sure they will.

Last week we had our first support group for patients who have undergone DBS
and those interested in the procedure. Over 70 people attended and it was a
truly wonderful evening. We showed video tapes of 2 patients (one male and
one female) before, during and after the procedure. Both patients were in
attendance and when introduced the female patient pulled the male patient out
of the audience and they spontaneously proceeded to dance. I cannot tell you
how much that meant to me.

One of the issues raised in the support group was the dilema of how are we
going to help the patient who cannot afford the surgery. A number of patients
who have had the procedure offered to donate money to help those in financial
need. So we will start a foundation, which may be called "The Gift of
Movement" to help those who need surgery but cannot afford it. Plans are also
underway to have fundraisers.

It has been my experience that patients who have had STN are a wonderful
group of people who will do whatever they can to help others in the
Parkinson's community.

Ivan, maybe a similar program could be created in Maine to help you, or
nationwide to help all patients.

Best wishes,

Anne O'Sullivan
Administrator
NYU Center for Movement Disorders

(212) 263-1483